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• XLRS
• Posted: 2011-11-29 15:28:57 By Steve L
• My son developed XLRS at the age of 2. He is almost 6. He started Kindergarden this year and we had fear that he would have trouble. He is doing fine and Thank God he has been stable for 18 months. You need to find a retina specialist who is familiar with XLRS. What state do you live in? We see Dr. Khaled Tawansy who is based in Los Angeles.

• Genetic
• Posted: 2012-01-01 14:17:43 By Michael P
• Hi Steve,
  
  XLRS is almost always inherited. If you do not have the condition it was passed from the mom. Check with the mom’s side of the family for relatives with the condition. Most likely you only know that they have poor vision and do not know about XLRS. I believe the NEI is continuing to do genetic testing so you may want to contact them or just talk with your doctor about the testing.
  
  Yes you need to find a retina specialist but try and find one that already knows about XLRS so that your son is not a novelty (sorry for that word but many retina specialists do not know about XLRS). In my situation Trusopt was successful in shrinking the retina cysts but did not improve my visual acuity. Benefits from Trusopt are better for younger eyes.
  
  All the best and let me know if you have other questions. Please read the many posting on the board for answers to many questions.
  
  MikeP
  

• Posted: 2012-01-20 18:01:37 By Kim L
• Yes I agree, you must find a doctor comfortable and knowledgeable with XLRS. We lived in orlando and our retinal doctors still sent us to Bascom Palmer in Miami for routine visits and every VH my son had. When we moved back to Nebraska we were initally referred by Bascom to use Iowa city for our doctors which we did for a year, but it is 4.5 hrs away and insurance didnt cover them so i paid alot out of pocket. I initially still tried to get a local retinal dr but he wouldnt do the Azopt or Trusopt drops that Bascom palmer wanted him to try, he didnt seem comfortable with XLRS. So we continued in iowa city until the expence became too much. I tried again to find local retinal dr in omaha that was good, now we did find one at Univ of Ne Med center and all goes well....but they have to be good with XLRS to assess for changes and repeat scans and possible treatments to slow progression. Just my thought!